The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) is a disease specific patient-reported outcome measure which assesses quality of life of patients with pulmonary hypertension (PH). [1] It was the first pulmonary hypertension specific questionnaire for assessing patient reported symptoms, quality of life and functioning. [2]
The CAMPHOR questionnaire was developed by Galen Research in 2006 [3] to allow for cost-utility analyses for treatments of PH. [4] The theoretical basis for the CAMPHOR is the needs-based model of quality of life, which states that quality of life is highest when an individual has the ability and capacity to satisfy their own needs. [5]
The CAMPHOR is made up of 3 main dimensions which assess symptoms, functioning and quality of life (QoL). [6] The symptom dimension is made up of 25 symptoms and is broken up into 3 subscales: energy, breathlessness and mood. The QoL scale has 25 items which focus on socialization, role, acceptance, self-esteem, independence, and security. The activity scale has 15 items. Response options include true and not true. Scores for QoL and symptoms range from 0–25, with higher scores indicating worse quality of life. Activity scores range from 0–30, with higher scores indicating more physical limitations. [7]
Since the development of the CAMPHOR, it has been translated and validated into fourteen different languages, [8] including Australian and New Zealand English, [9] German [10] and Swedish. [11]
The Cambridge Pulmonary Hypertension Outcome Review has been a useful tool in clinical trials as it allows researchers to assess whether new medication or therapy is effective. The CAMPHOR has been utilized in clinical trials which investigate the effects of treprostinil, [12] [13] as well as trials which investigate sildenafil. [14] [15]
Tadalafil, sold under the brand name Cialis among others, is a medication used to treat erectile dysfunction (ED), benign prostatic hyperplasia (BPH), and pulmonary arterial hypertension. It is a tablet taken by mouth. Onset is typically within half an hour and the duration is up to 36 hours.
Pulmonary edema is fluid accumulation in the tissue and air spaces of the lungs. It leads to impaired gas exchange and may cause respiratory failure. It is due to either failure of the left ventricle of the heart to remove blood adequately from the pulmonary circulation, or an injury to the lung tissue or blood vessels of the lung. Treatment is focused on three aspects: firstly improving respiratory function, secondly, treating the underlying cause, and thirdly avoiding further damage to the lung. Pulmonary edema, especially when sudden (acute), can lead to respiratory failure or cardiac arrest due to hypoxia. It is a cardinal feature of congestive heart failure. The term edema is from the Greek οἴδημα, from οἰδέω.
Pulmonary hypertension is a condition of increased blood pressure within the arteries of the lungs. Symptoms include shortness of breath, syncope, tiredness, chest pain, swelling of the legs, and a fast heartbeat. The condition may make it difficult to exercise. Onset is typically gradual.
A patient-reported outcome (PRO) is a health outcome directly reported by the patient who experienced it. It stands in contrast to an outcome reported by someone else, such as a physician-reported outcome, a nurse-reported outcome, and so on. PRO methods, such as questionnaires, are used in clinical trials or other clinical settings, to help better understand a treatment's efficacy or effectiveness. The use of digitized PROs, or electronic patient-reported outcomes (ePROs), is on the rise in today's health research setting.
Alizapride is a dopamine antagonist with prokinetic and antiemetic effects used in the treatment of nausea and vomiting, including postoperative nausea and vomiting. It is structurally related to metoclopramide and other benzamides.
PatientsLikeMe is the world’s largest integrated community, health management, and real-world data platform. Through PatientsLikeMe, a growing community of more than 830,000 people with over 2,900 conditions share personal stories and information about their health, symptoms, and treatments, with a goal to improve the lives of all patients through knowledge derived from shared real-world experiences and outcomes. Data generated by patients themselves are systemically collected and quantified while also providing an environment for peer support and learning. These data capture the complex temporality and competing influences of different lifestyle choices, socio-demographics, conditions, and treatments on a person’s health. Everything members share empowers the community with personal agency, establishing PLM as a clinically robust resource with demonstrated impact, including more than 100 studies in peer-reviewed medical and scientific journals.
In general, quality of life is the perceived quality of an individual's daily life, that is, an assessment of their well-being or lack thereof. This includes all emotional, social and physical aspects of the individual's life. In health care, health-related quality of life (HRQoL) is an assessment of how the individual's well-being may be affected over time by a disease, disability or disorder.
The Patient Health Questionnaire (PHQ) is a multiple-choice self-report inventory that is used as a screening and diagnostic tool for mental health disorders of depression, anxiety, alcohol, eating, and somatoform disorders. It is the self-report version of the Primary Care Evaluation of Mental Disorders (PRIME-MD), a diagnostic tool developed in the mid-1990s by Pfizer Inc. The length of the original assessment limited its feasibility; consequently, a shorter version, consisting of 11 multi-part questions - the Patient Health Questionnaire was developed and validated.
The Oxford Hip Score (OHS) is a standard patient-reported outcome (PRO) measure, or PROM, developed to assess function and pain in patients undergoing total hip replacement (THR) surgery, particularly in the context of clinical trials. The OHS has also been used for the assessment of patient outcomes, including physical therapy, and use of joint supplements(disease specific and general health measure are two other outcome measures)
The Ankylosing Spondylitis Quality of Life (ASQoL) questionnaire is a patient-reported outcome (PRO) measure which assesses the quality of life of patients with ankylosing spondylitis. The ASQoL is based on the needs-based quality of life model. It is a self-administered questionnaire which contains 18 items and takes up to four minutes to complete.
The Quality of Life Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA) is a disease specific patient-reported outcome measure which measures the effect growth hormone deficiency has on adult patients. The score of the QoL-AGHDA is used to determine the extent to which growth hormone deficiency has affected the patient’s quality of life, and what treatment can then be administered. A high score on the QoL-AGHDA indicates that the patient suffers from many symptoms and therefore has a lower quality of life.
The Patient Reported Outcome Indices for Multiple Sclerosis (PRIMUS) is a disease specific patient-reported outcome questionnaire which measures the quality of life (QoL) of patients suffering from multiple sclerosis.
The Asthma Life Impact Scale (ALIS) measure is a disease specific patient reported outcome questionnaire which assesses the impact that asthma has on a patient’s quality of life.
The Quality of Life Index for Atopic Dermatitis (QoLIAD) is a disease specific patient reported outcome which measures the impact that atopic dermatitis (AD) has on a given patient’s quality of life.
The Psoriasis Index of Quality of Life (PSORIQoL) is a patient-reported outcome measure which determines the quality of life of patients with psoriasis. It is based on a needs-based approach to quality of life.
The Unidimensional Fatigue Impact Scale (U-FIS) is a disease-specific patient-reported outcome measure which measures the impact of multiple sclerosis related fatigue. It is a 22-item unidimensional scale which is based on needs-based quality of life theory.
The Quality of Well-Being Scale (QWB) is a general health quality of life questionnaire which measures overall status and well-being over the previous three days in four areas: physical activities, social activities, mobility, and symptom/problem complexes.
The FACT-G is a patient-reported outcome measure used to assess health-related quality of life in patients undergoing cancer therapy. The FACT-G is the original questionnaire that led to the development of the larger Functional Assessment of Chronic Illness Therapy (FACIT) collection of quality of life instruments. The survey assesses the impacts of cancer therapy in four domains: physical, social/family, emotional, and functional. The FACT-G is also offered with additional questions measuring cancer-specific factors that may affect quality of life, leading to the creation of the Functional Assessment of Cancer Therapy - Head and Neck (FACT-H&N), the Functional Assessment of Cancer Therapy - Lung (FACT-L), and 18 others.
Chronic thromboembolic pulmonary hypertension (CTEPH) is a long-term disease caused by a blockage in the blood vessels that deliver blood from the heart to the lungs. These blockages cause increased resistance to flow in the pulmonary arterial tree which in turn leads to rise in pressure in these arteries. The blockages either result from organised blood clots that usually originate from the deep veins of the lower limbs of the body (thromboembolism) and lodge in the pulmonary arterial tree after passing through the right side of the heart. The blockages may also result from scar tissue that forms at the site where the clot has damaged the endothelial lining of the pulmonary arteries, causing permanent fibrous obstruction. Most patients have a combination of microvascular and macrovascular obstruction. Some patients may present with normal or near-normal pulmonary pressures at rest despite symptomatic disease. These patients are labelled as having chronic thromboembolic disease (CTED).